Sunday, May 30, 2010

IMFAR 2010 Autism Research Report by John Elder Robison: It Was a Wonderful, Geeky World With No Talk of Cure

John Elder Robison,  for reasons that are unclear to me,  is both an officer with Autism Speaks AND a critic  of parents who seek cures for their children's autism disorders.  Mr. Robison apparently has an Aspergers diagnosis. He is, according to a biography posted online at Red Room,  an author, very successful businessman, and ... a former rock band member.   He is not a researcher or health care professional and as far as I can tell he has absolutely no personal involvement with Autistic Disorder or those who are severely affected by their Autistic Disorder. 

The life of John Elder Robison has no resemblance to my son's with Autistic Disorder and profound developmental delays or the lives of the 75-80 per cent of persons with Autistic Disorder. and Intellectual Disability.  Like Alex Plank, Amanda Baggs, Michelle Dawson, Ari Ne'eman , and the entire corporate board of ASAN,  JE Robison is a person with very High Functioning Autism or Aspergers who purports to tell parents of severely autistic children, and the world, what they need to know about all points on the autism "spectrum".  John Elder Robison has been to IMFAR the annual mega autism research update and he is  back to tell us that all is cool, all is geeky.

IMFAR has divulged,  amongst other autism research breakthroughs that will help improve the lives of severely autistic children and their families, that having an autistic child does not increase the likelihood a couple will be divorced. Great stuff, there is  hope indeed that autistic children will live better lives with that kind of groundbreaking scientific scrutiny taking place.  Of course  if we can improve the sensitivity and communication skills of PARENTS their autistic children will live better lives. No more talk of mercury, aluminum and other ingredients injected into children, or of the toxic materials that ooze from plastic toys and jewelry,  or are inhaled from nearby smokestacks, or the ultrasound pounding of the brains of unborn children because environmental insults can not possibly cause neurological damage. And hey Andrew Wakefield was found to be unprofessional and therefore vaccines and toxic vaccine ingredients and vaccines contaminated with pig viruses should never, ever be questioned.

For Mr. Robison's part he informs us that IMFAR was a pretty cool place to be because, well, because there were lots of geeks there,  and geeks are cool. They are "endearing and appealing" and of course there is the familiar JE Robison refrain that talk of curing autism is nonsense.  You can help improve the debilitating aspects of autism disorders but you can not outright cure autism or autism(s):

 "That summary pretty much describes all these folks on a professional level. These are not nine to five workers. There lives do indeed revolve around the unraveling of their individual bit of the autism puzzle. There is no talk of "cure" here. ... Many are married to geeks, or have kids on the spectrum, or seek to marry a geek or geekette. I have seen that particular scenario play itself out time and again these past few evenings in the after hours get-togethers. ... In closing, I will offer you this essential truth derived from my careful observation of my own Cubby, Alex Plank, and other young spectrumites in attendance here: If you are a female entering this world, be forewarned that it is a one-way trip. For once you Go Geek, there is no turning back. It only takes one date with an eccentric scientist or engineer – after that, an ordinary banker or business person will never do . . ."

John Elder Robison: A World of Geeks - IMFAR 2010

What is the difference between a treatment which ameliorates and a total cure other than the extent to which the autism disorder is "ameliorated"?  John Elder Robison does not explain nor does he provide any basis for his declaration that autism disorders CAN NOT be CURED and WILL NOT be CURED.  None at all.  We, including those of us who have severely autistic children, are to take his word for it because, well because John Elder Robison is slightly autistic.  

Although Robison is a very successful businessman, a father, a former rock band member, published author and a person who does not shun the media glare he knows better than me as a father who has cared for a severely autistic, intellectually disabled son for 14 years what it truly means for my son  to be autistic.

For John Elder Robison autism is not about an inability to communicate, self injurious behavior or living your life in a residential care facility. And it is certainly not about the intellectual disability that is just coincidentally associated with 75-80 of those with Autistic Disorder.  For John Elder Robison autism is  about being a geek and not talking about finding cures for autism disorders.  

Apparently IMFAR was a great place to be geeky and no one fouled the air with talk of curing autism

Hip, Hip, Hurrah.


Claire said...

Harold, what an excellent post. The quote you put in made me gag. I suppose now the IMFAR conference can bill itself as a dating service for "geeks and geekettes" or for those whose marriages break up from the strain of caring for someone severely affected by their autism (except of course, thankfully, we now know that there aren't really that many marriages affected...). What a load of crap. I share in your frustration.

ian MacGregor said...

Is IMFAR against curing autism? I'm not sure. It may be John Elder Robinson's spin on things.

The support of treatments which ameliorates, but do not cure is simply is not rational.

A parent has a totally blind child, a treatment is found which if given for one week will allow the child to distinguish light from darkness, for two weeks will allow the child to see vaguely see shapes, and for three weeks will provide the child with normal vision. What kind of parent would stop before three weeks?

Adrianna said...

Frankly, I'm amazed that anyone would write what was quoted here. I could understand someone writing like that in their personal blog as an essay or something to sharewith friends. But who, in a professional capacity, talks of "geeks" and "geekettes?" How silly!

I won't belabor the many points about these ideas that I made in other posts, but I will point out that romance, friendship and marriage especially are challenging for autistics. No one is saying it's because they cannot feel or do not care. It is a fact of autistic life that that 'connection', and the ability to communicate that connection, is missing. And it's not something that magically appears as an adult when you find the right community of geeks.

ND proponents might have good intentions in that they want to give autistic people hope for friendship and community. But when that friendship and community don't materialize, that will only further isolate autisitcs. What hurts more is that they cannot even connect with the people who are supposedly speaking for them, in experiences, with regard to language and social customs, etc. They actually *shun* autistics with communication/social impairments from their online communities because they perceive them to be trolls. As "autistic"
advocates they should know better.

Roger Kulp said...

Hi Harold,

If you read what I post around the web,you know I have had a couple of important things happen.In April,I learned my sister had been diagnosed with autism sometime in the past,but was not ready to discuss it.She had been diagnosed as a child with bipolar disorder, and learning disabilities,but this autism stuff was new to me.

I also pretty much worked out my own medical,developmental problems,and yes autism,were due to a complex metabolic syndrome, centered around an extraordinary number of mutations in the MTHFR and COMT genes.Not one gene,but multiple mutations on both MTHFR genes,and on the COMT gene as well.Many of my mysterious symptoms,that I have had since childhood,are due to an inherited form of systemic vasculitis,part metabolic,part autoimmune.I also have been found to have a genetic/metabolic condition, traceable to MTHFR,that is similar to vascular dementia.This was the cause of my eloping.

I had the tests that found the MTHFR and COMT mutations nearly a year ago,but the doctor who orderd them,told me nothing about it.It took me all this time to sort it all out.

I recently sent an email to Dr. James in Arkansas,giving her a brief outline of my tests,and our medical histories.She said,yes a lot of our problems were due to MTHFR,but some may not be.She had seen very few MTHFR families who had as complicated a picture as we do,autism,or no autism.She suggested we have a complete mapping of our genetic makeup,and that this might prove to be very valuable to other families.

I had not thought of this before,but I am looking into it.If Conor does not have Down Syndrome, or Fragile X,this may be the only way to find out what is going on with him.

The more I think about it,the more sense it makes.I think everybody who has a more complicated autism diagnosis,be it intellectual disability,or metabolic disease, needs to have a complete genetic profile done.After all,autism can't be autism without damage in the womb.

As I have said,I think "autism" is a BS diagnosis,with far too many different conditions lumped under this broad umbrella.Does Conor have the same condition Hannah Poling does?

It is foolish to talk about curing "autism",when you have no idea what underlying condition you would be curing that is causing the "autism" in the first place.

People like Robinson should not be of any concern to us,any more than their conditions are anything like ours.Let them have their "autism", and wallow in it like pigs in slop,while we go on to find the real causes of what's wrong in our families.